GSC Fellow Nadia Spawn on Evolving Considerations of Compassionate Endings

Before starting my nursing rotations, I carried two fundamental beliefs about life:  I used to think that doctors had a duty to take extreme measures in order to save lives and that people should fight for their lives indefinitely.  Working with nurses in the medical, telemetry, intensive care and elderly behavioral health units over the past year has given me a new perspective on end-of-life care. On any given day, at least a third of the patients that I work with have dementia or Alzheimer’s, depend on ventilators or feeding tubes for life, and/or are overly-medicated individuals who can do little more than stare off into space, unable to move a body part to feed themselves or even change positions.

Image  located: http://guardianlv.com/2013/12/euthanasia-for-the-elderly-1-in-5-dutch-support-it/
Image located: http://guardianlv.com/2013/12/euthanasia-for-the-elderly-1-in-5-dutch-support-it/

This experience has completely changed my perspective. I no longer think that we have a duty to fight for our lives after a certain point. In fact, I’m starting to question whether or not it is more ethically and morally responsible to take extraordinary measures to maintain one’s life, no matter what the cost.  I wonder whether one’s quality of life should be considered in the course of patient care.

In healthcare, there is great emphasis on “maleficence,” which is to do no harm.   This concept makes end-of-life care even more interesting, forcing the question, “Is maintaining the life of someone who is endlessly suffering doing more harm to that individual than good?”  This issue is particularly relevant now.  As populations in the industrialized west age, the patient population will mirror follow, where elder care, comfort care, and end-of-life care characterize a larger proportion of health care.  Moreover, many patients fail to plan for or consider end of life care, especially when they may not be able to care for themselves.

What does it say about us, that man of us are so reluctant let go of family members who may be suffering and to whose slow deterioration we bear witness? Are we asking too much of our loved ones by sustaining them when their quality of life is quite poor?   Who are we taking extraordinary measures for?

In the past 20 years, there have been changes in laws internationally that have resulted in the legalization of assisted suicide in certain countries. The Northern Territory in Australia was the first region in the world to legalize euthanasia in 1995, under specific medical circumstances, however it was overturned two years later. The Netherlands, perhaps the country most notoriously associated with legalized euthanasia, created official law allowing for euthanasia under specific circumstances in 2002, specifically for the purpose of euthanizing suffering in newborn infants. Current law in the Netherlands requires patients to be suffering unbearably with “no prospect for improvement,” patients must be able to vocalize their desire to engage in assisted suicide, and a second physician, uninvolved in the case, must sign off in agreement (Nicol, Tiedemann & Valiquet, 2011).

An Australian research study found that younger doctors were more “advanced” in their perspectives and knowledge on assisted suicide—that younger doctors were more likely to discuss the possibility of euthanasia with patients than were older doctors (Kellehert, Chambers, Corcoran, Keeley, & Williamson, 1998). Could acceptance of assisted suicide be a generational difference? The older generations are the founders of modern medicine, who sought to prolong the inevitability of death through medical advances. It is possible that younger generations are more realistic as a result of watching elderly loved ones suffer through debilitating health declines at older ages, and therefore recognize assisted suicide as a way to empower individuals with determining when and how they experience a dignified death.

Though assisted suicide has not been legalized in the United States, as of yet, it has been legalized in Oregon, Washington, and Vermont. Most states have laws specifically against assisted suicide, yet it remains a debated topic in the medical community and is gaining increasing support from younger generations who can relate to certain cases of medically assisted suicides of patients who suffered from painful terminal illnesses.

I think that if more people could witness what end-of-life care actually looks like, it would help them better consider options at the end of life.  The growing attention that the topic is getting is only encouraging discussion in the public, who ultimately have the power to drive laws and practices in the medical community. The biggest obstacle with changing laws relating to assisted suicide, is that most of the general public doesn’t have a vested interest in maintaining a perspective on the topic until it is too late. End-of-life care is a topic that should be discussed in younger ages, as mental status and physical health can change rapidly, resulting in an inability to make decisions on critical topics, such as this one. For many, the time to consider end-of-life care is now, while they are healthy and able to consider such matters.

Here are some thought-provoking articles, podcasts, and videos related to compassionate care, assisted suicide, and advanced directives:

An NPR Podcast interview of Judith Schwartz, regional clinical coordinator for the East Coast of Compassion & Choices, an organization that provides support and resources to individuals as they explore end-of-life care options and peaceful death. This interview discusses what assisted suicide is, the benefits of it, who is eligible for it, where it is legal, and more.

Gross, T. (2012, October 9). When prolonging death seems worse than death. Fresh Air @ NPR Podcast. Podcast retrieved from: http://www.npr.org/2012/10/09/162570013/when-prolonging-death-seems-worse-than-death

A compelling perspective from Ezekiel Emanuel, the Clinical Bioethics Department head at the National Institute of Health, on how life after a certain point is no longer worth prolonging, how the quest for immortality is not all it’s cracked up to be, and why he is choosing to cease all medical treatments and medications after the age of 75.

Robson, D. (2014, October 21). Why I want to die at 75. BBC Future: World-Changing Ideas. Retrieved from http://www.bbc.com/future/story/20141021-why-i-want-to-die-at-75

Compassion & Choices (2015, January 21). Brittany Maynard’s family, compassion & choices partner with California lawmakers on end-of-life options bill. Retrieved from https://www.compassionandchoices.org/2015/01/21/brittany-maynards-family-compassion-choices-partner-with-california-lawmakers-on-end-of-life-options-bill/

Death by Rollercoaster” – The Euthanasia Coaster (Video file). Retrieved from https://www.youtube.com/watch?v=eKmKLZOAT38

References

Kellehert, M., Chambers, D., Corcoran, P., Keeley, H., & Williamson, E. (1998). Euthanasia and related practices worldwide. Crisis: The Journal of Crisis Intervention and Suicide Prevention, 19(3), 109-115. http://dx.doi.org/10.1027/0227-5910.19.3.109

Nicol, J., Tiedemann, M., & Valiquet, D. (2013). Euthanasia and assisted suicide: international experiences. Retrieved from http://www.parl.gc.ca/content/lop/researchpublications/2011-67-e.htm#a2


nadiaNadia Spawn is a first-year graduate student in the Masters Entry to Nursing Practice program with a Bachelor of Science in Kinesiology from the University of Illinois at Champaign-Urbana. Her research interests include nurse education & professional development, community healthcare resources for low-income and minority populations, and wellness programming. She is a member of the DePaul Student Nurses Association and the Zeta Sigma chapter of Sigma Theta Tau International. When not on-campus, Nadia works as a Sitter at Macneal Hospital, volunteers with senior citizens at the Near West Side Community Development Corporation, and enjoys spending her free time Latin & Swing dancing. Her future goals include getting research published, working in the Emergency Department post-graduation, entering a PhD program, and eventually working as a nurse educator at an institution of higher education.
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Author: Jessica Bishop-Royse

Jessica Bishop-Royse is the SSRC’s Senior Research Methodologist. Her areas of interest include: health disparities, demography, crime, methods, and statistics. She often finds herself navigating the fields of sociology, demography, epidemiology, medicine, public health, and policy. She was broadly trained in data collection, Stata, quantitative research methodology, as well as statistics. She has experience with multi-level analyses, survival analyses, and multivariate regression. Outside of the work context, Jessi is interested in writing, reading, travel, photography, and sport.

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